Oh How I Hate Myasthenia Gravis - Let Me Count the Ways!
Posted Nov 07 2012 11:52am
1. My food and drink like to travel through my nose. Seriously, that might have been funny 20 years ago, but I'm like 40 now. I just want to prepare my food and enjoy eating it. I'm not sure how myasthenia ends up re-routing it but I have ended up with everything from soda to peanut butter coming through my nose. (It is still funny sometimes LOL)
2. I try to spell my name over the phone and the person has no idea what I'm saying. My name is Patrice Garrick. It's bad enough people think I'm saying Patricia or Theresa (?) or Patrick or Garrett. When my mouth is cooperating, I can easily spell it and give examples of words that start with the letters in my name. But when myasthenia is in action, the letter G sounds like thee and the rest of the conversation goes downhill from there.
3. Breathing is NOT overrated. It is a scary thing to feel like I can't breathe. I occasionally had shortness of breath because of lupus. But myasthenia has taken me to another level altogether. I literally get to the point where I feel like I need to get to the hospital immediately or I will die. All except one time I was able to get it in order at home. But it's not something I will ever be accustomed to. The only laughable moments come when I blow out forcefully to try to get my body to take a deep breath and my kids think I'm sighing because I'm angry at them!
4. I have trouble keeping my eyes closed. I must say I am grateful that I haven't started with having trouble keeping my eyes open. But for someone that's tired from lupus, PTSD and 2 teenagers, when I lay down and close my eyes, I want them to stay closed!
5. I drop things at random. I was always clumsy but now it's just ridiculous. I'll have something in my hand and I guess the little receptors have all been destroyed by the antibodies and my hand just lets go of whatever object I'm holding at the time. This is the one of the symptoms that I must say is funny every single time. (I guess that's because I haven't broken anything yet.)
6. I have to take yet another medication and see another doctor. I am sick and tired of being sick and tired and taking medicine and making doctor's appointments and taking blood tests. Lupus has worn me out. Now myasthenia gravis wants to join the party. But what can I do but go with the flow?!